They don\'t get it because \'Allergy\' doesn\'t sound so bad--I HAVE AN IDEA

Posted on: Tue, 01/15/2008 - 12:25pm
LDR's picture
LDR
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Joined: 09/28/2001 - 09:00

So many times we are faced with people who just don't get it. Even family members and close friends who mean well. I have to admit, 5 years ago I was one of those mother's who didn't get it either, and thought why do they ban peanut butter from school--my daughter loves it, and it would be so easy to make a PB&J sandwich for lunch.

I think part of the problem is the terminology. 'Allergy' just doesn't sound that bad. Runny nose, watery eyes, a little rash. No one wants to be inconvenienced for someone's runny nose.

I have decided (New Year's resolution) to refer to PA as peanut anaphylaxis. For those that know what the word means, they should "get it" a lot sooner. For those that don't, it opens up an opportunity to educate. Not sure if I'm re-inventing the wheel here, but it may be worth a try. Anyone care to join me? If we all use this terminology, we may be able to change people's perceptions of PA and increase tolerance in situations of high risk.

I'd be interested in hearing what others think.
LDR

Posted on: Tue, 01/15/2008 - 10:19pm
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I so whole heartidly agree, allergy sounds so passive, ananphylaxis is much more alarming, people can have a chance to ask what that means if they are not familiar..great chance to educate.
I wish all families will ban the word allergy for anaphylaxis grade allergies.
Ananphylaxis, anaphylaxis , anaphylaxis......

Posted on: Wed, 01/16/2008 - 12:06am
lj's picture
lj
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I usually call it a "life-threatening" allergy. That seems to grab their attention.

Posted on: Wed, 01/16/2008 - 8:52am
GinaC's picture
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Joined: 11/11/2006 - 09:00

I agree and believe that is why some organizations use anaphylaxis in their name: [url="http://www.anaphylaxis.ca/"]Anaphylaxis Canada[/url]
Take care,
Gina
[url="http://allergymoms.com/index.php"]AnaphylaxisMoms! (jk)[/url]

Posted on: Thu, 01/17/2008 - 6:29am
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Well I'm on the opposite side of the fence. Not all peanut allergic children experience anaphylaxis. You personally, and many others here have the stripes to use that term, indeed. I wouldn't want to label [i]all[/i] PA individuals as anaphylatic, because, well... it's just not true.
sorry, jm 2 cents.

Posted on: Thu, 01/17/2008 - 7:41am
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Hey everyone can put their two cents in , but my understanding is that there is no way to tell if or when a reaction will invole that which is life threatening ,aka anaphylaxis. To me they will always be one in the same, it all about precaution.

Posted on: Thu, 01/17/2008 - 9:49am
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Joined: 11/30/2005 - 09:00

I think that is a great way to put it.
My daughter scored so low on the first skin test to soy. They said it was just a mild allergy. Few weeks later she had an anaphylatic attack. So I don't think they really do know which kids can suffer from Anaphylaxis or not. The more people that understand our kids allergies the better.

Posted on: Thu, 01/17/2008 - 10:26am
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Originally Posted By: maphiemomHey everyone can put their two cents in , but my understanding is that there is [b]no way to tell if or when a reaction will invole that which is life threatening [/b],aka anaphylaxis. To me they will always be one in the same, it all about precaution.
Exactly. I think we as an allergic community run the risk of being dismissed as overprotective parents if we label all PA kids as anaphylactic (not that [i]I[/i] care). If your child is anaphylactic, then you 'get' to use that medical term, if your child is not, well then you're fibbing...to put it mildly.
I have one child in each situation. I tell people that my child who has [i]not[/i] experienced anaphylaxis as just that--a child who has not experienced anaphylaxis. I don't tell them he is anaphylactic, it's just not true. Given his high RAST numbers, the [i]liklihood[/i] of reaction is great, but no one knows what the severity will be. Like you said 'no way to tell'.
Children who do not experience life threatening reactions aren't covered by anti-discrimination laws either. Legally speaking, one can't 'fib' about that either.
You're correct about precautions, my management of both my kids FA's are very similar.
more 2 cents :)

Posted on: Thu, 01/17/2008 - 10:59am
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Joined: 01/10/2008 - 16:39

My daughter has only reacted with hives from PB. But the doctor said there is no way to tell if she will end up with anaphalaxis or if she will just remain with hives. I am not willing to take the chance. I try to make sure everyone that has contact with her understands that. Seeing as she is only 2 I have a lot of control over whom she is around.

Posted on: Thu, 01/17/2008 - 12:09pm
LDR's picture
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We all have different doctors, and may hear different information. Most will agree that there are a lot of unknowns.
We see the doctors at Mt Sinai in NY. Not that they are better than anyone else's doctor, but they are well informed and well respected in the field of food allergies. I'll share what I've been told. They told me that with peanut in particular, you cannot predict the severity of the allergic reaction. It's not uncommon that the first reaction is not anaphylactic, but that does not mean one will not have an anaphylactic reaction on subsequent exposures. The literature suggests that reactions tend to get more severe over time.
My daughter did not have an anaphylactic reaction during her first and only reaction at 18 months, and despite early low numbers on lab testing, I was advised of the risk of an anaphylactic reaction. The numbers have changed over the years, down one year (to the point that the idea of a food challenge was raised) and then up the next--apparently not enough is known about the variability in these lab values and their relationship to anaphylaxis. Our management strategy has always been the same, regardless of lab tests.

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